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Author
Topic: My ID Doc says CD% is BS (Read 5975 times)

My ID Doc called to give me my lab results, when I asked him about my CD4%, he told me "I don't believe in that crap"Needless to say I was a little surprised at his response, but I did get the answer I was looking for.I'm debating if I should just keep track of them myself, or go looking for a new Doc, I do feel comfortable with this guy, but I don't agree with some of his views, and I let him know as much.

My doctor also plays down the CD4% number. He explained that, in his mind, it is a derived value, and not the most important metric to watch. He always stresses the need to maintain an undetectible VL, and a resonably steady absolute CD4 count, but he tends to gloss over the CD4% on a consistent basis.

now I've always relied more on the %'s than the real number. The real numbers jumps all around but the % seems to have a constant increase. I always thought my Dr did too but to be honest I can't recall how she really feels about them. When I see her next month, I'll ask her.

My doc says the % is more important when a person is NOT on meds. Once on meds, it's the viral load that is important. The CD4% tends to be more stable and can help one decide if the absolute CD4 is really having a trend or if it's just jumping around a bit - and this will help determine whether or not it's time to start meds.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

This is very interesting indeed. I've always thought *heard* that the % was more important because it is the more steady number. This will be a very good discussion point for our July appointment.

Rod, you mean that with an u/d VL and decent CD4s, you can still be classified as AIDS if you have a % below 14%. Or, was the % added to the list, ie: CD4's below 200, X amount of OIs, AND CD% below 14%. This is also very interesting.

This is very interesting indeed. I've always thought *heard* that the % was more important because it is the more steady number. This will be a very good discussion point for our July appointment.

Rod, you mean that with an u/d VL and decent CD4s, you can still be classified as AIDS if you have a % below 14%. Or, was the % added to the list, ie: CD4's below 200, X amount of OIs, AND CD% below 14%. This is also very interesting.

Huh.

Mum

Mum,

I'm pretty sure that it is absoulte CD4 <200 OR CD4% <14% OR having any of the AIDS defining OIs that gives one the AIDS diagnosis.

My understanding was that the % gave a clearer picture of ones immune system, but after reading these replies, I guess it's not a standard thing, and not all Doctors use it-guess I'll keep pops after all.

And mecch-my Doc said it exactly as I typed it, I'd say he was being colorful, I had to stifle a laugh when he said it over the phone.

He says the CD4 absolute is like a automobile's shock absorber (moving up and down depending on how bumping the road is) and the % is how smooth the ride is or in other words how good the shocks are working.

My ID Doc know that I like cars, so he explained it to me in words that made some since to me.

He says the CD4 absolute is like a automobile's shock absorber (moving up and down depending on how bumping the road is) and the % is how smooth the ride is or in other words how good the shocks are working.

That's excellent! A really good way of putting it - even I can understand what he's saying and I'm not all that car savvy. And looking at your numbers, your shocks must be giving you a very good ride indeed!

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

i was told it is more about cd percentage. that is more inmportant. am i correct

On Jun 22, 2009 Joel E. Gallant, M.D., M.P.H. replied:

No, that's not true. The CD4 count is more predictive of opportunistic infections and is the number used to determine the need for therapy. The CD4 percent just has the advantage of being less variable, so it's useful when you have discordant CD4 counts and need to find out whether there's really been a change.

My doc says the % is more important when a person is NOT on meds. Once on meds, it's the viral load that is important. The CD4% tends to be more stable and can help one decide if the absolute CD4 is really having a trend or if it's just jumping around a bit - and this will help determine whether or not it's time to start meds.

With all due respect to your doc, I haven't really observed all that much stability in the CD4%, even though I'm not on meds and an HIV controller with a low VL. If you look at my numbers you can see that sometimes the CD4% once jumped from 31 to 40% within a 3 months interval - that's a 29% increase. Then after that from 40% to 32%. That's a 20% drop. Then later on from 34 to 27. Another 20% drop. Then later on from 30% to 38% . A 26% increase. Basically, I see relatively large variations from one test to another. But I see no trend in the direction of those variations.

If I look at my absolute CD4 count, I can't say that it is much more stable than the CD4%. One time it dropped from 749 to 553, a 26% drop. Later on, it went from 627 to 793, a 26% increase. These look like pretty big jumps too - at least to me.

And of course my variations in CD4 and CD4% don't always happen in the same direction at the same time - though sometimes they do.

I like my VL curve a lot better - consistently down the 15 months with no HAART.

CD4 count change on a daily basis and even during the day and for Poz and Neg people, so that's why you need to look at the trend on an average basis to really analize it.. the % is a good indicator when the CD4 is behaving erratic (thou can be erratic by itself as your numbers show,..). I was pretty stable around 480-500 count for a couple of years then dropped to 280-300 over 6 months period.. % remained stable (20-22%) so doc was not so alarmed from the count drop as I was, thou he did recommend starting treatment. the overall trend, in my case, is headed down, so I think it is time for me to start.. My VL by the way is totally unreliable as it started to increase from 10-15K to 30-35K, but when the CD4 count dropped the VL actually came down to 20K... Doc says that in the lower range numbers (<55K) those changes (up or down) don;t matter much.. the virus is NOT supressed and hence the trend of the CD4 count is down.. (yours is pretty impressive, btw, with no meds - good luck with that

I asked my I.D. doctors about CD4%, and they said it's not as important as it used to be in the pre-HAART era. When I asked them if my 1st numbers CD4: 353 13.2 % mean AIDS , they replied NO...My diagnosis is HIV A2 infection... (HIV A3, B3, C1, C2, C3 infection is classified as AIDS, but only for statistics...)

Erm, I am sure the CDC classification does not even define AIDS except as a gloss for historical/repoiting reaons, preferring rather the category A-C/1-3 system for severity of HIV infection, allowing CD4% and other immunological markers to = CD4 <200.

My first HIV doc, who made me believe God is actually female, really kept an eye on my percentage when I was not on meds. She was the best..... and I'll never forget how she helped me through my initial shock after my diagnosis.

My current doctor I have to pry my percentage out of him, his thinking is more in line with some of the others doctors most seem to have here. when it comes to Cd4 and Vl being the deciding factor on how things are going with me.

Your ID Doc sounds like mine here in NYC. They may be related...lol. I was infected 9months ago, since then, my VL has gone from 400k to just above 100k today. My CD4 is sitting in the mid to upper 400s. My % is at 17%. I too am still not sure what to do. He keeps telling me to relax and does not suggest I start meds yet. Seems to want me to wait and see more where my numbers go......ugh....confused.

My VL has remained undetectable since starting meds 5 years ago but my CD4 count hasn't budged much over the 220 mark during the same period. I've been very good general health wise over this time. My doc has used the CD4% I which has risen and been strong as an good indicator. I think he wants to give me some good numbers for psychological reasons. I think it is clear the good CD4 count is a great goal and indicator of immune system function. The CD4% has been helpful in my case to give a perspective on blips and these borderline CD4 readings.

My ID just told me the other day about the % and she said she gets a better picture from the % then the number b/c it depends on how long the blood sits in the lab before testing and the % is always steady when the numbers jump b/c of the time it takes to test.Only reason I asked was my cd4 number as u can see from my post keep going down but the % is steadly rising,she says its fine I'm undetectable and the percentage is climbing so I'm good,She is a really great doctor!

Wow, very interesting to see a big difference in what each doctor looks at. My Doc goes primarily by %, she said it gives her the best view over time of how my immune sys is functioning and further when to start meds. For me, it wasnt unusual for my absolute numbers to bounce wildly each visit, all the while my % was taking an almost predictable steady decline until I started meds (see sig line)

even though I'm not on meds and an HIV controller with a low VL. If you look at my numbers you can see that sometimes the CD4% once jumped from 31 to 40% within a 3 months interval - that's a 29% increase. Then after that from 40% to 32%. That's a 20% drop.

Such individuals, then called HIV long-term non-progressors, were defined by their lack of HIV-related symptoms and high CD4 T cell counts that remained stable for periods of 7 years or longer

Looking at ur no's madbrain you been positive for 3 years. now considering many people might not find out that they are positive till 10 years after infection, many many people could have been in your position.

having said that I hope eventually you are proved to be a Elite Controller, and I hope you can Stay without meds for a long time.

I think to call yourself a HIV controller after 3 years of infection is somewhat jumping the gun.

Such individuals, then called HIV long-term non-progressors, were defined by their lack of HIV-related symptoms and high CD4 T cell counts that remained stable for periods of 7 years or longer

Looking at ur no's madbrain you been positive for 3 years. now considering many people might not find out that they are positive till 10 years after infection, many many people could have been in your position.

having said that I hope eventually you are proved to be a Elite Controller, and I hope you can Stay without meds for a long time.

I think to call yourself a HIV controller after 3 years of infection is somewhat jumping the gun.

The definition you cited is for the old "long-term non progressor" category. At the time it was crafted, it was not possible to measure HIV viral load. The definitions for HIV controllers all include viral load - undetectable for elite controllers, or <2000 for viremic controllers. These definitions don't require a particular length of infection.

So far, the scientists in the studies that I'm enrolled in are calling me a viremic controller so far based on my CD4/VL history. Indeed, it's possible that others could be in the same situation as mine without knowing it. But most people don't precisely know their timeline for infection, and they wouldn't know their CD4/VL history. It's impossible to study people who are not even diagnosed.